I passed my IT course and thought it was time for a change so enrolled on a creative studies course which I thoroughly enjoyed. During this time I went back to Bradford Royal Infirmary to try and control the infection in my right ear. I thought I was going in for a simple operation to see what was happening in there.

A few hours later, I woke up with a bandage on my head and I experienced sharp pains around my ear. Mr Raine told me he had to make small cut behind my ear to see inside the ear better. He didn’t succeed in making the infection go away.

I stayed in hospital for three days. The day after the operation I was feeling stronger and could manage a bowl of cereal, but the second day I started getting a bit weaker; it was harder to move and walk around, my legs felt stiff. Each day, I got weaker until it got to the point where I stood up and collapsed in a heap on the floor like a rag doll. I couldn’t eat as was unable to swallow and I ended up choking on my food.

My mum decided it was time to call our GP after all the sleepless nights and interruptions; it didn’t take long before the GP came and found I was so worse for wear that I had to go back into hospital. Our GP called an ambulance to take us to Bradford as that’s where I had the operation. I couldn’t see why I had to go all the way back to Bradford instead of the local hospital. It was kind of scary going in an ambulance, but it had to be done because I was just so weak. I just wanted to be strong again.

The ambulance people were great and talked to me on the way to Bradford, it was evening when we got to the hospital and I felt nervous because I didn’t know what they were going to do. They took me to the same ward I had the operation on until the doctor could see me the next morning.

The next morning when I woke up I still found it hard to move around so I pressed the buzzer for a nurse to help me sit up. I felt like a baby needed to be picked up because I couldn’t do it myself. A doctor came round to see me and see if he could shed any light on the situation, he looked in my eyes with a light, and checked my heart and breathing. He was concerned about my eyes and how they were droopy and I couldn’t use them normally but he just thought that it was a one-off due to the anaesthetic I had from the operation and would keep me in for a couple of days. That evening, I found it impossible to sleep or even get comfortable in bed because I couldn’t move myself, I asked the nurse if I could have sleeping medicine but they would not give me one because I had one the night before.

I found the nurses on the night shift hostile and distant; I didn’t have my cochlear Implant on and I had to call for a nurse as loud as I could because I felt that she had put the buzzer back on the wall on purpose to stop me from buzzing her. When the nurse came, she told me to be quiet because other people were sleeping. I could understand that but how else could I get her attention? She had put the buzzer on the wall, I felt paralyzed and stuck to the bed, I got upset and felt violated by this because they were supposed to help me. I cried myself to sleep.

The next morning, they waited for my mum to arrive and moved me from the private room to a ward.
Mr Raine came to check on me because he had heard I was back in hospital and see how I was. He had decided to consult a specialist called Mr Busby and see what was going on. He examined me and thought I had a condition called myasthenia gravis also known as ‘Rag doll syndrome’. It meant that at any time you could just flop into a heap on the floor because your body becomes weak. I became scared at the thought of this but I took it in my stride. Mr Busby decided to send me to another ward and because he was concerned about my breathing and swallowing, he was worried that I might choke on my food or my breathing may be affected so he decided to put a tube in my nose and into my stomach so that they could feed me. At this point I was terrified and didn’t think I could do it, but Mr Busby reassured me that this was for the best otherwise I would become very ill. I had to swallow the tube down and once it was in I couldn’t really feel it.

They sent me for an X-ray so that they could check it had gone into my stomach and not my lungs. I had to do puffs into an inhaler every other hour to measure how much energy I had in my breaths. There were times where I hated it there, like when I was asleep and I was awoken by a doctor trying to get blood out my hand, and it was hurting because of the way he was trying to squeeze blood out. This made me feel uneasy. The next day, I found my hand was bruised as a result of it and was sore to move.

Mr Busby decided to move me to intensive care where they could give me 24-hour care and keep an eye on me. By this time I was really drained in energy and weak to be bothered about anything, I just lay in bed watching a TV that the nurses had found for me. I could only have two visitors to my bed so my mum stayed with me all day and my dad came in the evenings when he’d finished work. Mr Raine came to visit me while I was there to see how I was doing. He decided to try something else that might help my energy levels, it involved a small procedure by putting two wires into my groin to take plasma out of me and clean the plasma in a machine which would then go back into my body. This was called a plasma exchange.

A surgeon had to find where to put the wire in my groin using an ultrasound. When he did the actual procedure I don’t think I felt anything because I was too tired and not very bothered about what was happening to me, I had already gone through so much already that it was just another thing to do. I found the plasma exchange strange, it was like I was being flushed inside. I had to lie down while I was having it done because if I stood up I’d feel dizzy, light headed and faint. Each plasma exchange took about two hours to complete. After three days in intensive care, I was moved to a ward where the nurses were nice and looked after me. I kept myself busy with puzzle books that my mum bought me. I had plasma exchanges on the ward too until they were satisfied that I had enough and got some of my energy back.

Every other day the physiotherapy nurses came round to see me and do some exercises and do some walking round the ward to get my feet again after being laid up in bed. I was still a bit wobbly but with help I was fine. I had five plasma exchanges and my energy levels were getting higher but I was still a bit weak. After all the time I had been in hospital, I had lost a stone and I was still getting fed through the tube in my nose. One day I felt confident enough to walk to the TV room with support of my drip. I watched “Basil Brush” with my mum. Every time he said “Boom Boom” after a joke, he made me laugh. Mum said that was the first time I had smiled since I came into hospital because I had trouble with my facial muscles too. I was feeling a bit happier for the first time. The nurses asked if I wanted to be moved to a private room instead of being on the ward and I said yes. I had my own TV in there. I had a few sleepless nights because I was thinking too much about things, like “will I get better?” “When will I go home?”

By this time I had been in hospital a month, and it was nearly Christmas, I wanted to do all the things I would normally do before Christmas such as get presents for my friends, see the family, send out cards, see all the Christmas decorations up in the town, but I was stuck in hospital so just had to grin and bear it.
Every day, I took a step forward to going home, eating little pieces of food like mashed banana because I still had the tube in my nose. The nurses spoke to the doctor and said I could eat food as long as I ate it carefully as well as getting fed by the drip.

It was two weeks before Christmas, the hospital dietician came to see me and see how I was doing, she told me I might be able to go home if I could drink some special nutrition drinks to help me put the weight back on that I had lost. I tried different drinks to see which ones I liked; I decided I liked a strawberry milkshake drink that had lots of calories and vitamins in.

At last, I was allowed to go home as long as I had the nutrition drink every day; I was so pleased that I was going home for Christmas. I also had to take steroids. I had to start off with 10 steroids everyday and once Mr Busby felt I was getting better, he would tell me to reduce the steroids intake such as 10 this week then nine the next.
I still had my groin wire in from the plasma exchanges so I had to have that taken out. I was dreading this but it didn’t hurt at all but I was amazed at how long the wire was! Later on, I had my feeding tube taken out, it was a weird sensation but I was glad to be free of it.

At last I could have a proper bath and wash and not worry about getting anything wet. Although I was happy to be going home, I still felt drained. I had got upset so much and felt depressed about the condition the doctors thought I had.

I was so quiet and withdrawn over Christmas, even when family and friends came over to visit me. The worst day was Christmas Eve, when we had the usual Christmas party and invited family and friends over. I sat on the settee watching the optic fibre tree in the corner of the room change colours, my mum in the kitchen cooking the food for the party and my dad sat in his chair listening to Christmas songs being played on the radio. I felt depressed thinking what did I do to deserve this? Will I be ok even though I have this condition? Will I still have a normal life? It was never ending tears while the world went on around me. On the evening of the party, I still sat in the corner of the settee doing my kriss kross puzzles, I let out an occasional smile even though I felt sad inside. When it came into the early morning of Christmas day, friends were still there; as I became tearful they reassured me I had to be strong and that I would get through this bad patch. I didn’t believe them then, but it did get better in the end.

To be continued...